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Des associations de patients ont été constituées par des patients et familles pour informer, aider, assister, accompagner les personnes concernées par certaines pathologies ou groupes de pathologies. Nous avons regroupé dans une liste (non exhaustive et à compléter) celles que nous avons pu identifier ou qui se sont manifestées.
Ces associations ont un rôle important pour sensibiliser les instances et structure de prise en charge en portant et en faisant valoir le message des patients et familles et leurs doléances.
